Hypermobility Spectrum Disorder and Ehlers-Danlos Syndrome Thread

Hi

This thread is all things to do with Hypermobility Spectrum Disorder(HSD) and Ehlers-Danlos Syndrome(EDS). It is for people who have the condition, know someone who does or are just interested.

In 2017, EDS was reclassified for academic purposes and this resulted in stricter diagnostic criteria they then changed Hypermobility Syndrome to Hypermobility Spectrum Disorder. EDS is a group of inherited genetic conditions which affect the collegen structures of the body. There are known genetic markers from most of the EDS subtypes however, the most common one hypermobile EDS (hEDS) still has an unknown marker.

Treatment and prognosis of both HSD and EDS are both variables as symptoms can vary significantly from person to person.

Because of how abundant collegen is symptoms can vary but the most common are hypermobility, pain and fatigue.

You can find more info in the below links

https://www.ehlers-danlos.com/what-is-eds/
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

The average age of diagnosis is around 20 years so if you think you may have it, it is best to speak to your GP please do not seek medical advice on this thread.

For something 'rare' I have seen a surprising amount of people on this forum with EDS or HSD and that's why I created this, for people to talk about experiences, adjustments and anything else.

Please be respectful of others and respect people's privacy.

All the best

Hey Rusty,

Nice post. I’m a sports therapist and Physiotherapy student at KCL. I purchased this book last year. Worth a read with some very valuable info inside.

Ooh I think I’ve seen that on the EDS support group.

I might have to pick up a copy!

out of interest, what do you learn about EDS/HSD in your course?

They haven’t taught us anything specific. It might be something we’d come across in a placement ie MSK outpatients. We touched on it when we were being taught about mobilisations in that it would be a contraindication to perform mobilisations on patients who are hypermobile

Also, we’d need to adapt rehab protocols to suit their needs eg resistance band work.

Some of the rugby players I work with for my sports therapy job are hypermobile.

Do you find physio is effective for them?

I’ve missed had LOTS throughout my life and never found it helps

I make modifications to rehab. I work on improving patient awareness with their proprioception, isometric strengthening, stability.

Have you looked into seeing a physio who specialises ‘specifically’ in working with patients who are HSD/HEDS?

Hi, I thought id say hello, I have heds, pots and a vascular syndrome, you replied to my post on an anonymous thread I made. I was wondering if anyone knows of a teen/ya support group for eds? Thank you!

Hi!

So so happy you’ve been diagnosed. I PMd you a long time ago about it, my name was chris01928. You can use this thread. I know EDS support groups are in pretty much every constituency. What do you need support with?

Ah I remember! Thanks to you, I actually pushed for my genetic appointment and subsequently got diagnosed! So thank you for that!

Just in general really, since I last spoke to you my health has gotten so much worse, I'm now tube fed and in a wheelchair most of the time, which is tough. And I've spent most of this year admitted, I just got home from seven weeks there last month. I would love to talk to teens who understand what its like, no one else seems to.

That's so good to hear, I'm so proud of you for pushing for a diagnosis

It sounds like you have quite a severe version of hEDS. We did use to have @Pathway on here who had EDS and was very experienced with it. Are you able to eat most of the time? I can only imagine how tough it is to be in a wheelchair all the time it must feel incredibly disabling and ostracising. Although it may not seem like it at the moment, HSD/EDS are quite common. I know of 2 people at work (with a staff size of about 100) who are seeking a diagnosis of EDS and there are so many people on TSR who have EDS. I am trying to create a community on here but these things take time! By all means message on this thread, it just helps sometimes to get things off your chest.

You can also look for your local EDS support group here

I think I have cEDS tbh, I have all of the skin features and mitral valve prolapse, as well as scoliosis and pots? And a vascular syndrome, so I'm not sure. I can't eat at all, if I do I'm in lots of pain and feel/be sick. I can drink small amounts but that's about it atm.

Thank you! I think it really helps talking to others with eds/hsd. I hope you are doing okay.

Have you spoken to someone about an alternative diagnosis?

Have you tried modified diets or is that not suitable in your situation? Are there any other plans for your management?

Do you have any hobbies? It seems like a lot has changed for you in the 12 months or so since I first spoke to you, how are you feeling?

I'm doing ok, my symptoms are nowhere near as severe as yours. I've got lots of bowel investigations coming up soon, I've been on strong laxatives since 7 and my body has become used to them so there not very effective anymore, but there are treatment options so I'm optimistic

No re the alternative diagnosis, I was diagnosed with hEDS in January, and have been admitted often since February, so it's been the last thing on my mind.

I've had bladder issues too, and very narrowly avoided a long term catheter.

My dietician mentioned blended diets (through a peg, which is apparently happening next month), but it would have to be bolus (over half an hour), which I would likely not tolerate. I'm on 20+ hour feeds atm, so it probably won't happen.

I used to be a gymnast, which I can't do anymore and haven't been to school since last November (apart from a couple of afternoons between admissions which ended up being a disaster, I won't even get into that).

I hope you get some answers and hopefully treatment for that, I'm glad you're staying optimistic.

I would love to make a eds support group for teenagers/young adults, eds uk currently don't offer one so I was thinking of contacting them re that for something to do, and help others going through this sh!t situation.

I have a nasal tube at the moment, so am too self conscious to join any groups, but if I get my peg in September as planned I want to join St johns ambulance (but its probably not accessible, and I probably wouldn't have the energy)
Thank you very much for your support!

That's completely understandable, it might just be something to keep in the back of your mind for when your management is a bit more stable

Gosh, well done on that. Is medication working for your bladder then?

A PEG! wow I didn't know that could be a thing for people in your space because of the muscle laxity. Does your feeds atm help?

Oh right, so your symptoms started quite late then, do you think something triggered that? Were you the anon who said that there school wasn't accommodating for them?

Thank you

Oh they do in my constituency, they have a coffee morning every week or so and a fb group etc. Maybe look on fb and contact them that way?

You probably find your self-conscious because of the vast amount of changes that you have had to go through recently. Having a PEG vs. nasal tube is a big decision so you'll have to talk through everything with your team. IT would be amazing for you to get involved in something like St Johns Ambulance, there might be phone advisor roles or something along those lines. No need to say thank you, its exactly what this thread is for

The bladder situation is still not great, they wanted me to keep the catheter in but I refused to go home with it, so I'm waiting to see urology outpatient I think. They said my bladder isn't working properly, I had one in for a lot of the seven weeks anyway.

Do you mean feeding into the stomach or the peg itself?

Yeah I throw up quite a lot, I'm on a slow rate and 3 different anti sickness drugs, which helps to a degree, but not completely.

Nj feeding was mentioned by one of the other gastro consultants and surgeon, but my consultant didn't want to go down that route. Though he did mention tpn if things got worse, but I was so unwell at the time I can't remember exactly what he said.

I'm 14 now, I have had signs since I was quite young (hernia, very bendy, hence the gymnastics, joint pain which was put down to gymnastics, heart problems) but they didn't effect me seriously. I think keeping active helped to an extent, but the trigger might have been puberty or the hpv vaccine (I had it in the March, then got bad symptoms in June), though I am not against vaccines as I haven't spoken to my medical team about it, and it may well have been a coincidence. I also had a reaction to my covid jab in late October, and ended up in a&e with heart monitors as my heart rate was very high.

Yes I was the girl who had issues with school being accessible , they've actually got worse since, I fell out of my chair and ended up in hospital, thankfully it wasn't broken but was subluxed at the time (I'm not sure if I spoken to you after this, I doubt so).

I'm in Northern England, my mum joined the local support group, but I was admitted at the time and she was the only parent.
My team suggested the PEG, I wasn't sure about the idea tbh but I will need a tube long term anyway so they're just doing it sooner rather than later, plus I won't have to keep getting tube changes (Ive had over ten ng tubes, they're meant to last three months but often don't last over a week).
Thank you!!